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Chronic fatigue syndrome and co-morbid and consequent conditions...

Kati

Patient in training
Messages
5,497
Chronic fatigue syndrome and co-morbid and consequent conditions: evidence from a multi-site clinical epidemiology study

Lucinda Bateman, Salima Darakjy, Nancy Klimas, Daniel Peterson, Susan M. Levine,Ali Allen, Shane A. Carlson, Elizabeth Balbin, Gunnar Gottschalk and Dana March

http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VISPUeF87CK

Abstract

Background: Epidemiologic data that inform our understanding of the
type, frequency, and burden of co-morbidities with chronic fatigue
syndrome is limited.

Purpose: To elucidate co-morbid and consequent conditions, using data
from a clinical epidemiology study of long-term CFS patients.

Methods: Some 960 adults with CFS were identified at four sites
specializing in the diagnosis and treatment of CFS. Patients reported
their demographics, CFS course, other medical diagnoses, and current
functioning. We determined associations between: co-morbidities and a
patient's current health relative to their health when diagnosed with
CFS; CFS symptom severity at onset and subsequent diagnosis with a
co-morbid condition; and presence of a co-morbidity and functional
ability. We also modeled the change in CFS symptom severity over time
as it relates to the presence of a co-morbidity.

Results: Of the sample, 84% was diagnosed with one or more co-morbid
conditions after CFS onset. Fibromyalgia, depression, anxiety, and
hypothyroidism were the most common diagnoses. Nearly 60% of the
sample reported a mental illness.

Conclusions: In general, co-morbid conditions reduced functional
ability and were associated with the worsening of CFS symptoms over
time. This study provides important new information on the prevalence
of co-morbid conditions and their impact on the course of CFS.
 

CBS

Senior Member
Messages
1,522
FYI - This study was a CFI project. The patients were drawn from four of the clinics participating in the CFI pathogen/Lipkin study (Miami, New York, Nevada, Utah). While these patients may have participated in the CFI pathogen study, that is not necessarily the case as this cohort is far larger than the pathogen cohort and selection of patients was independent (selection criteria for this project excluded a subgroup of the pathogen patients).
 

DanME

Senior Member
Messages
289
Hi there,

I have read the study, here a small summary.

Participants: 18+, Fukuda Criteria, Four Clinical Sites in the US: Miami, Nevada, New York, Salt Lake City. 960 completed a telephone survey. Included only (from >1500 patients), if diagnosed min 5 years earlier at one of the four sites.

Demographics seem to be typical for a clinic based sample.

Mean age: 55 years
Mean age at onset: 35 years
Female: 80%
White: 95%
CFS mean duration: 15 years
Currently working or attending school (or equivalent): 40%

Comorbidity:

Fibromyalgia 61%,
Hypothyroidism: 35%
Spine problem: 26,5%
Other autoimmune diseases: 15%
Narcolepsy: 3%
Sleep apnoea: 22%
Restless leg syndrome: 17,5%
Endometriose: 20%
Low testosterone: 36%
Cancer malignity: 16,4% (majority skin cancer in Florida and Nevada with 7,4%)
Cancer malignity without skin cancer: 9%, which is twice as high as the general population
Depression: 47%
Anxiety: 39%
PTDS: 13%
Bipolar disorder: 3,0%
Other neurological diseases: 9,4%

Any comorbidity, except from depression and sleep apnoea, decreased functional ability to engage in work or school. The high rates of affective disorders are comparable to other neurological diseases like MS, but not to other chronic diseases in general (around 25%).

They measured sudden and gradual onset, too, but don't give any numbers.
 
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A.B.

Senior Member
Messages
3,780
Any comorbidity, except from depression and sleep apnoea, decreased functional ability to engage in work or school. The high rates of affective disorders are comparable to other neurological diseases like MS, but not to other chronic diseases in general (around 25%).

They measured sudden and gradual onset, too, but don't give any numbers.

Thanks. I would have been interested in any differences between sudden and gradual onset.

I wonder if some of these hypothyroidism cases might just be improperly treated hypothyroidism.

And what is with over a quarter having a "severe spine problem"?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
The article appears to be behind a paywall. How is it some of you are able to see more than the abstract alone? Thanks.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
"Nearly 60% of the sample reported a mental illness."

Seriously ? When are they going to figure out that we'd feel much better mentally, physically and emotionally if they'd make some real progress in the me/cfs arena. Those of us who became ill before the internet were completely lost.
 

Kati

Patient in training
Messages
5,497
Thanks. I would have been interested in any differences between sudden and gradual onset.

I wonder if some of these hypothyroidism cases might just be improperly treated hypothyroidism.

And what is with over a quarter having a "severe spine problem"?
i would suggest that hypothyroid with low testosterone could mean HPA axis dysregulation as a consequence of having ME more than primary hypothyroid.
If patients mention hypothyroidism, chances are this is already being addressed medically.
 

A.B.

Senior Member
Messages
3,780
If patients mention hypothyroidism, chances are this is already being addressed medically.

Yes, but are they getting the right treatment? Many patients report that looking at the TSH and treating with T4 alone isn't sufficient. Some doctors recognize this, others don't.
 

Kati

Patient in training
Messages
5,497
Look, personally, it didn't make a difference whether I was on Synthroid or Cytomel. i still feel shitty.

ETA remember that these patients have been seen by our own experts. Klimas,Peterson, Bateman ans Levine. No spring chicken.
 
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DanME

Senior Member
Messages
289
I do find this interesting. Even anecdotally many of us have spinal issues. I wonder if its causal or consequential. Exhaustion may easily lead to poor posture, but poor posture can lead to nerve and muscle issues. Or is it a bit of both, or a statistical anomaly?

My back feels quite weak, especially while sitting. I always thought it is caused by the weakness of the deep muscles, which stabelize the spine. Maybe poor blood perfusion or something else. I guess this could cause a lot of trouble over time. The deep muscles have three or four layers to give the spine more power.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
My back feels quite weak, especially while sitting. I always thought it is caused by the weakness of the deep muscles, which stabelize the spine. Maybe poor blood perfusion or something else. I guess this could cause a lot of trouble over time. The deep muscles have three or four layers to give the spine more power.

me too. The last time I took flouroquinolones this was an obvious side effect along with frozen shoulders and popping knee caps.

My me/cfs became full blown after 3 successive rounds of antibiotics in 1990. These were taken for non stop green mucous in my lungs. Tmi. Lol.

Based on my last reaction to quinolones in Jan 2013, I think the ones I was given in 1990 were quinolones too.

Hypoperfusion makes this worse of course.

Have you tried strengthening your back ? I keep meaning to but I'm occupied with daily living. Exercise has helped my legs, neck and abdomen muscles recover tho.

Eta. I believe my body's inability to process gluten (dq2 gene) stopped me from healing from the first quinolone assault in 1990. My 1990 reaction, chronic muscle spasms, didn't begin to heal until 2006-7 after eliminating gluten in 2005. The worst part of second reaction, frozen shoulders, starting in 1/2013, lasted 9 months ? more or less. I'm not sure if some of my other symptoms can be attributed to this assault.
 
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Kati

Patient in training
Messages
5,497
I do find this interesting. Even anecdotally many of us have spinal issues. I wonder if its causal or consequential. Exhaustion may easily lead to poor posture, but poor posture can lead to nerve and muscle issues. Or is it a bit of both, or a statistical anomaly?
Spine problems.. Do they mean bony issues, muscles issues or inflammation issues as in myelitis?
 

CBS

Senior Member
Messages
1,522
I do find this interesting. Even anecdotally many of us have spinal issues. I wonder if its causal or consequential. Exhaustion may easily lead to poor posture, but poor posture can lead to nerve and muscle issues. Or is it a bit of both, or a statistical anomaly?

My bolding - @alex3619 - Subjects were asked to only report conditions with onset after CFS/ME onset.

"Have you been diagnosed by a medical professional with any of the following conditions since/after the onset of CFS").​

This also should be kept in mind regarding psychological issues (the term "consequent" in the title was deliberate, the term co-morbid was used to account for the possibility that some minority of patients any not have restricted themselves to reporting consequent conditions - conditions that presented simultaneously with CFS were recorded:

Lastly, this is from the discussion (again, my bolding):

"Nearly 60% of our participants reported the emergence of mental health symptoms (depression, anxiety, PTSD, and/or bipolar disorder), which is strikingly similar to other published reports addressing clinic- [10-12] and community-based [30] samples. The prevalence of mental health diagnoses in our sample is somewhat lower than a prospective study of CFS patients by Wessely and colleagues [8] and higher than a recent report from a Belgian sample of CFS patients [13]. The mental health diagnoses reported by participants were not necessarily determined by diagnostic criteria or structured interviews, but the high prevalence is sobering. Depression as a co-morbid condition is notably high in patients with chronic illness (15-25%) compared to healthy primary care patients (5-10%), and the highest rates (40-50%) are in patients with neurological illness [31]. In our study, the higher prevalence of depression reported by the Utah subsample could have resulted from differences in clinical approaches, for example a physician who actively checks in with patients about mental health issues. Furthermore, numerous studies have demonstrated that depression is more prevalent in women [32, 33], and the Utah subsample included a greater proportion of women than the Florida and Nevada subsamples. However, the lower prevalence of depression in the New York subsample, which relative to other sites comprised the largest proportion of women, contradicts this explanation. The high rates of affective disorders in our CFS subjects may reflect the severely disabling nature of the disorder, high symptom burden, lower quality of life, and biologic changes in the brain secondary to chronic illness [34]. Our subjects had been diagnosed and treated by CFS specialists, but a 2003 population based study [35] showed that less than 20% of cases had been diagnosed or treated for CFS by any physician, a situation which could additionally increase the rates of secondary depression or anxiety.​